Guinea Pig…or Not?

Clinical trials. Are you a candidate? Are you interested in being in a trial?

Let me just start off by saying, I am a huge fan of participating in clinical trials. I was in one for nivolumab from July 2013 until July 2017. It was a wonderful experience.

What Are the Benefits of Participting?

Why am I such a fan of clinical trials?

The biggest and best benefit, in my opinion, is that when you participate in a clinical trial, you benefit from the latest science has to offer. In today’s world of rapid discovery, that’s huge!! When I got into my trial, nivolumab was just known by a number, BMS-936558. It was a couple of years before I actually heard the words nivolumab or Opdivo.

When I got into my trial, chemotherapy had failed me. I thought I was nearing the end of my life. I decided to join a clinical trial because I thought it would give me an opportunity to help future generations of lung cancer patients. I can honestly say that it never occurred to me that I would personally benefit from my participation.

I was under the same misconception as many people are when it comes to clinical trials. I thought I was going to be a guinea pig, a lab rat.

You could argue for the fact that you are a guinea pig, I guess. After all, you are agreeing to let researchers discover how a certain drug or drug combination works when administered to humans or in certain dosages.

Comprehensive Medical Care and Attention

But, what I wasn’t prepared for was the amount of attention that a person participating in a trial gets. In addition to having a doctor interested in cutting-edge therapies, I had a researcher who saw me at every visit. Every symptom was recorded and studied. I was shocked when I once mentioned in conversation that a new kitten had scratched me and even that made it into the trial report!

I didn’t have to do anything but show up for appointments. Every visit, a complete blood work up was done. If I had a cough or a fever, a specialist was called in right away. If my blood oxygen level was low, I was immediately sent to a pulmonologist.

I am not suggesting that all oncologists don’t care deeply about how every patient is faring, but participating in a clinical trial requires that medical personnel consider every little thing about your well-being and cancer care. You never know what will be significant so the medical team assumes everything is. (Even kitten scratches!)

Extra Attention to Details in a Trial

While I was in the trial, I seen every two weeks by my oncologist or nurse practitioner and my researcher. Now that I am no longer in the trial, but still getting nivolumab, I only see the medical team (minus the researcher) once a month.

Scans were scheduled regularly. The trial had very specific requirements about when the scans were to take place. Now, if I don’t push getting an appointment, I might only have scans every 4 to 6 months. I should still get them every 3 months but it easier for me to fall between the cracks now.

While I am not currently in a trial, I would quickly join another if the opportunity arises. I really miss the extra attention to details that came with being in the trial. And, certainly not least, I credit being in the clinical trial with saving my life! There is no higher praise than that!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The LungCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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